Monday, November 19, 2007

Alone Again, Until...

An ex of mine had a philosophy on life that seemed rather morbid when he first put it forward, but as I’ve grown older, it’s made a lot more sense: “No expectations, no disappointments.” Given the events of the last few weeks and the spectrum of emotions they‘ve elicited (particularly where I‘ve ended up), I’m wishing that I’d done a bit more to embrace that perspective.

It started with a response to a blog entry I received from one of my most cherished friends, in which he mistook my willingness to accept my circumstances as courage when they are, in fact, pure cowardice. It seems that I didn’t really like admitting that I was nothing more than a big ‘fraidy cat, because after three plus years of being committed to a reality in which there is no surgeon out there who could help me (if I were to somehow change my mind about being cut open again), I started researching the wonderful world of neurosurgery.

After a few days of digging, I happened across a web site dealing with syringomyelia, a condition I have, that also talked about spinal cord tethering. I started reading some stories about the miraculous results that people were having thanks to the doctors at the Chiari Institute, and it happened: I started to feel a flicker of hope.

But even more than hope, I started to feel less alone. In my now 30 plus years of living with an anaplastic astrocytoma, I’ve only ever met one other person who shared my diagnosis and lived for as long as I have. Just that diagnosis alone made me feel like an orphan in the world, feelings that only intensified as I survived more life-threatening experiences and was diagnosed with other rare diseases. No matter where I looked, I couldn’t find anyone who could come close to relating to the realities of my life…until I found this web site. To my astonishment, the first reply to my introductory post is a woman who has survived many of the tribulations I’ve had, and my hope that I had found people whom I could commiserate, who would truly understand how frustrating it is to live as an anomaly, soared.

Then I started really reading the site in its entirety, and all of those hopes were dashed. In my elation, I failed to grasp that the talk of de-tethering on this site referred to (in the most basic of terms) the releasing the lower end of the spinal cord to the bottom of the spinal column, which has no relation at all to the surgery needed to release my cord. When that was brought to my attention, the spark of hope that the Chiari Institute could offer me any relief, or even better odds for coming out of a detethering/duraplasty procedure better off than I went in was snuffed out.

And the more personal stories I read, the more I felt that while we all have at least one degenerative spinal cord disease, the people with the specific diseases covered on the web site were, for the most part, very different from me. Some are just much earlier in the course of their disease than I am…many have just been diagnosed. Most just don’t appear to have symptoms as severe as mine. This is not meant to dismiss the pain and suffering those good people must endure, it’s just a conclusion made on quantifiable evidence including number and dosage of medications needed to function part of the time. I just can’t see someone who only needs to take a small dose of a muscle relaxer to get relief from spasms to understand how it feels to have plasticity so severe that I have a pump implanted to deliver medication directly to my central nervous system, take the maximum daily dosage of another oral anti-spasmodic drug, and still don’t get more than 60 percent relief from the tension, twitching, and knots.
The emotional crash that occurs when what seems to be a long-sought and much needed oasis is discovered to be nothing more than a mirage has always hit me hard, but for some reason this particular experience knocked me down harder and is on track to keep me down for longer than other times I’ve been through this. I suspect it’s because I went into this search under a shadow of fear that this is exactly what would happen. It’s not in my nature to re-open decisions I’ve made, and it’s definitely not my typical M.O. to ignore nagging red flags, yet that’s exactly what occurred.

Despite the lingering effects of those crushing emotional blows, I was able to confirm with a sky-high degree of certainty that my only options are having a horribly risky surgery, and that there isn’t a neurosurgeon out there who has any experience with anatomy as fucked up as mine. Again, this statement is not meant to belittle the very serious problems faced by others. It’s just a matter of fact that there are astronomically poor odds of finding someone else has:

  • had 90 percent of their cervical spinal cord removed,
  • a 90+ degree kyphosis,
  • a 35 degree scoliosis,
  • a brain stem syrinx,
  • tethering of the remaining cervical cord to the dura,
  • posterior and anterior spinal fusions from C2-T4,
  • had 6000 rads of radiation to the cervical and thoracic spinal cord, and
  • who had to have their left trapzius muscle removed and used to cover a previous spinal incision when a leak of cerebral spinal fluid couldn’t be repaired through more traditional means.

On good days, I look at all I’ve been through and am astonished at what a miracle it is that I am alive and can do so much. On bad days, I see all that and all I feel is lonely...

...until, seconds before posting this entry, that same dear friend mentioned earlier replies to the pouty, "oh poor me" email sent minutes before I put these thoughts to paper, and from over 2000 miles away makes me feel special and loved and embarrassed, and far from alone.

Everyone should be so lucky to have such a wonderful person in their life.

1 comment:

aj said...

This reminds me of this thought I've had lately that hope is overrated.

The first two times I went to see an "expert" about the syringomyelia that was slowly getting worse, I was optimistic that we'd find a cure. Then, I was told I was uncurable. That was really hard to deal with. It was crushing.

Since then, I learned to accept my limitations and an unsure future. It wasn't easy, but I was dealing with it. I focused less on hope and more on a positive mental attitude.

I had decided that hope was overrated.

This year, I visited another expert neurosurgeon. I was telling my friends before hand how I'm not getting my hopes up. The general reaction was that hope is good, you need hope, silly. I don't think they understood--or maybe I still don't.

I suppose that when things are 110% unbearable 100% of the time, you need hope to continue living.

The human spirit (or whatever it is) has a tendency to thrive in crappy circumstances, however, like a weed.

A weed doesn't hope for better conditions. A weed just tries its best to thrive with what it is given.

I know some amazing children who were born with spine abnormalities and have had multiple surgeries and depend on a chair to get around school. These kids are bright, fun to be around, and they smile. They are determined to thrive.

For someone who has just become truly aware of what these things mean, around age 30, I felt like I had a lot to learn from these children.

Ok, now I'm rambling on...